Monday, August 25, 2008

Autism and Stealth-Adapted Viruses - Science or Non-Sense?

A New Brunswick acquaintance of mine, BJ McKelvie, is a fervent promoter of the work of Dr. W John Martin. BJ devotes all, or some, of the profits generated by the Autism song "I'm In Here" to fund an "investigational study", described on the ACE Pathway Investigational Study site as:

A double blind research study to evaluate the safety and effectiveness of methods aimed at activating an alternative cellular energy (ACE) pathway in the therapy of autism and related childhood disorders.

The study involves the scientific discovery that autism and other unexplained disorders are caused by viruses that escape immune recognition. These viruses are called stealth-adapted viruses. The major advance is that the existence of stealth adapted viruses has helped bring into focus the discovery of an auxiliary virus defence mechanism that involves an alternative cellular energy (ACE) pathway. Fortunately, the body has an anti-virus defence system other than the immune system. This pathway can be activated using enerceuticals. Activation can lead to symptom improvements and, importantly, can also potentially prevent autism from occurring.

Autism: The Mounting Toll of Denying the Existence of Stealth-Adapted Viruses

The Centers for Disease Control and Prevention (CDC) will receive additional funding for autism research through the Combating Autism Act signed into law today by President Bush. Let’s hope it will use a modicum of this funding to confirm and extend findings that indicate active virus infection in the majority of autistic children. The viruses found in these children do not activate an effective anti-virus immune response and have, accordingly, been grouped under the term stealth-adapted. In spite of repeated requests, no formal effort has been made within CDC to perform stealth-adapted virus testing on children with autism. Contributing to this indifference is a lack of real expertise in atypical viral infections and a political concern that some stealth-adapted viruses arose from the simian cytomegalovirus of African green monkeys (SCMV). As confirmed by studies within the Food and Drug Administration (FDA), earlier batches of live polio vaccines were not uncommonly contaminated by SCMV.

Autism is a descriptive term for symptoms attributed to brain damage. By many measures, an increasing number of children are showing this affliction. Indeed, the phase “autism epidemic” is widely being used in the media. Yet, why hasn’t serious consideration been given to a potential underlying infectious cause? Again, this is partly because most of the professional dealing with this disorder are not microbiologists and sadly, also because a lot of money is being made from parents of an ever expanding pool of patients.

An infectious cause for autism is not only suggested by its increasing prevalence but also by chronic fatiguing illnesses that are commonly present in other family members. Parents of autistic children will sometimes deny any symptoms hoping to keep the focus on their son or daughter. Closer questioning, however, will often reveal less than stellar health with fatigue, impaired sleep, poor memory and other symptoms consistent with ongoing brain damage. Indeed, it is reasonable to have predicted that such parents were at an increased risk for having a child slip into autistic behavior as he or she faced the emotional challenge of socialization. It can also be argued that a stealth-adapted virus infected infant may be especially susceptible to additional damage caused by vaccinations that can potential over activate the immune response.

A useful course of action is for a small grouping of parents of autistic children to insist that the CDC or corresponding State Health Department, obtain a blood sample from their child and culture the blood in a manner suitable to demonstrate the presence of stealth-adapted viruses. Undoubtedly, some if not most cases will yield a positive culture. Such findings will help offset the politically motivated denial of the existence of stealth-adapted viruses and once more draw attention to the issue of SCMV contaminated polio vaccines. For additional information please refer to www.s3support.com or e-mail to s3support@mail.comW. John Martin, M.D., Ph.D.Institute of Progressive Medicine

I do not pretend to have the expertise, with a few exceptions, to determine the merits of any purportedly scientific theory about the causes or treatment of autism. [I refuse to take "swimming with Dolphins", Nambudripad's Allergy Elimination Treatment" and some other interventions seriously]

For the most part I rely on responsible expert professionals to make those determinations. To that end I frequently cite reputable reviews of autism interventions such as the US Surgeon General, the MADSEC (Maine) Autism Task Force, the New York State Department of Health and the American Academy of Pediatrics. I have found no mention of Dr. Martin's "stealth-adapted viruses"theory or his "activation of alternative cellular energy (ACE) pathway" treatment mentioned by any credible review of autism and autism treatments.

The earliest of these 9 articles was written in 1999. The ACE Pathway Investigational Study site has a section called "the Scientific Research". All articles in the section are authored by Dr. W. John Martin:

The "stealth-adapted" virus concept does not appear to have been picked up by Dr. Martin's professional colleagues. It does not appear to have been take seriously by medical professionals.

Now we have an "investigational study" being conducted. Some of those who are encouraging parents to have their children participate in this studies are "true believers" in Dr. W. John Martin and his work. I recently engaged in a Facebook "discussion" with some of Dr. Martin's advocates. I had a few weeks ago posted a response to a comment by BJ McKelvie who cited a 1999 article about ABA and other scientific autism treatments. Then recently someone named Cherie Pettie commented on the same thread and accused me of being "ignorant" and "uneducated". When I pointed out that I had read some of what Dr. Martin has had to say I was told by Ms Pettie that I should call Dr. Martin and speak to him personally if I wanted to understand the man and his work. Expressions of faith in Dr. Martin are encouraged, serious questions are discouraged.

Ms Pettie and Mr McKelvie are strong proponents of Dr Martins' treatment theories. Their belief is disturbing to me. Mr. McKelvie at least partially finances the current "investigational study" with proceeds from "I'm in here". Both he and Ms Pettie are already convinced that the treatment works and that is the message they are delivering with great fervor, to parents when asking them to participate. Their strong belief in Dr. Martin is interesting but faith and belief do not necessarily make for good science.

The parents who are indoctrinated with Mr. McKelvie's and Ms. Pettie's belief in Dr. Martin's theories, with their biases, will then become "clinical investigators":

This investigation is done at home in the childs least restrictive environment. It's administered and documented by the parents who become “clinical investigators” under the direction of “The Institute of Progressive Medicine” Burbank, California. It is understood that bringing children who battle autism into clinics or hospitals enduces “meltdowns and the related stress can trigger epileptic seizures in those who battle autism related epilepsy. The treatment can be done while the child sleeps at night in bed or is awake. This decision is best left to the parents.For this study a "clinical investigator" is simply someone who administers the treatment and takes notes under strict guidelines. There are several protocols to follow during the study. A baseline is first taken on the child’s current condition, then the treatment is administered then the parents are required to complete online weekly clinical data journal of the child’s progress.

I see nothing wrong with parental input in professional studies. I do see a problem when those parents are recruited with emphatic personal testimony that the treatment being studied works. I see a problem when any questioning of Dr. Martin's theories is met with outright hostility. With such a biased foundation I find it doubtful that the ACE Pathway "Investigational Study" will be anything more than an exercise in affirming the work of Dr. W. John Martin; a study with little or no scientific value.

5 comments:

I was first introduced to the Ace Pathway Investigational Study by my cousin BJ McKelvie. I have had many serious questions concerning this "treatment" and Dr. Martin. Too many to list here.

For the most part, I have stayed out of any active conversation on facebook or elsewhere concerning this matter. By chance, I was reading the very same thread on facebook in which you were involved. I was very disappointed to see the personal attacks and name calling. I made the mistake of saying so and I am now blocked from BJ McKelvie and Cherie Peattie's friends lists. I was a member of the facebook group they have for the study but now can only view it. Apparently, I must request to join. Highly doubtful at this point.

I find everything about how the study is being run, as well as, the behaviour and tactics of BJ McKelvie et al very disturbing. I have seen clear evidence of this sort of behaviour on their part prior to my being blocked and the personal attacks made against you by Cherie Peattie. I have also found evidence that someone in their camp is using the internet to try and gather information on the parents wishing to register in the study. In one case, a child was denied taking part due to a parent listing internet links about Dr. Martin. The rejection letter was signed by BJ McKelvie himself.

Thank you for sharing this most worthwhile read. I look forward to reading more of your blog in the future.

I am one of the parents in the ACE study that you posted about. I'm just not understanding why you wouldn't want to speak with BJ in person or at least call Dr. MArtin and get the facts about this study? It could help your child or someone else's that you may know! Why not just try it? It isn't harmful and it's non-invasive, so what is the loss in trying? I will say that I have never personally met B.J. or Cherie so they have in no way "brainwashed" myself or my family. My son's father, in fact, was a skeptic about this treatment until he saw the RESULTS and now he knows that there is just no way Gabe could have made that much progress in 2 weeks on his own. Friends and family of ours are baffled at how well Gabe is progressing now after doing this treatment. I consider myself to be a pretty level-headed, grounded person and I did my research on this study before ever signing my only child up to participate. I will never, ever regret that decision because we have tried everything else and nothing has worked, until now. I'm not saying that you have to like the people involved in this study, but just please do your homework and contact people who KNOW about it to get your info. The internet is FULL of lies and people who are only out there to slander people, so half of the information about this study are probably those who have absolutely no knowledge about ACE PATHWAYS.

I wish your child well. I know BJ McKelvie. We have met several times here in NB. And we have email discussions concerning experimental treatments for autism.

You offer your testimonial evidence in support of this treatment. Fine. Every treatment known can offer similar testimonial evidence including secretin which was big when my son was diagnosed, chelation and swimming with dolphins. But testimonial evidence is weak evidence compared to controlled studies by professionals.

Instead of telling me to "call BJ or Dr.Martin" could you refer me to ANY independent studies of this treatment or any reputable professionals who accept Dr. Martin's theories?

Did any of those treatments you mentioned have a success rate as high as ACE Pathways does thus far? I doubt it. My son's pediatrician seemed to think it sounded perfectly logical and is currently looking in to it himself to see the science of it. I will for sure let you know what he finds when he gets back to me about it.I guess my issue with your concern of finding a "medical professional" ,other than the doctors already behind this study, is that this study isn't nearly as expensive as most therapies are each year and take only 5 nights vs. 2 years to see the same or better results. I'm just saying why not try it? $350 is not that much money, and if it adds to your child's quality of life then that would be worth any sum of money to me. Thank you for wishing well for my child, I really appreciate that and the same goes for your child as well! I, like you, am hopeful for a cure for autism in the near future and I really do think that we will see one. I am excited to think that we will be a part of it in it's earliest stages.

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The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

"We have to look also at environmental factors, and from my point of view, the interaction between the genetic factors and the environmental factors ... It looks like some shared environmental factors play a role in autism, and the study really points toward factors that are early in life that affect the development of the child"
Joachim Hallmayer, MD, associate professor of psychiatry at Stanford University in California

Even Out Environmental and Genetic Autism Research Funding

Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones.

We need to even out the funding.

Irva Hertz-Picciotto, UC Davis M.I.N.D. Institute Researcher

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Today I pledge to continue;I Pledge to continue to fight for the availability of effective autism treatments;I Pledge to continue to fight for a real education for autistic children;I Pledge to continue to fight for decent residential care for autistic adults;I Pledge to continue to fight for a cure for autism;I Pledge to continue finding joy in my son but not in the autism disorder that restricts his life;Today, and every day, I Pledge to continue to hope for a better life for Conor and others with autism, through accommodation, care, respect, treatment, and some day, a cure;Today, and every day, I Pledge to continue to fight for the best possible life for Conor, my son with autistic disorder.

Dr. Jon Poling : Blinders Won’t Reduce Autism

"Fortunately, the ‘better diagnosis’ myth has been soundly debunked. ... only a smaller percentage of this staggering rise can be explained by means other than a true increase.

Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear — genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities."

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes — vaccines — are all in the research agenda.

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It's NOT About ME

I am the father of two sons one of whom is severely autistic with intellectual disability. I have advocated for autism services for autistic children, students and adults in New Brunswick, Canada and I blog and comment about autism on the world wide web. And I like to walk .. a lot.